About Me

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After being told I would never be able to have children, I am now a stay-at-home Mommy to Maddie who happens to have Down Syndrome. I've been married 16 years to my best friend, having the time of my life. Thanks for stopping by and sharing in our little journey through life.

Thursday, December 19, 2013

Hosting Christmas with My Family Part 2 - Maddie Opens Gifts!

Although we did serve the homeless for our Christmas we also did the whole consumerist-spoil-your-kids-rotten-thing with lots of gifts and goodies (thanks to Grammie and PaPa!!)

Our Occupational Therapist told us to get ready because this Christmas would be so much fun.  
She said Maddie would more than likely be more expressive and present.  
I actually thought Maddie was already pretty expressive until I filmed this video...
Now, I understand what she was talking about!!!

Wednesday, December 18, 2013

Hosting Christmas with My Family, Part 1 - Blessing Bags

This was my first year hosting Christmas with my family.  
We did our Christmas last weekend since it's Kyle's families turn to get us for Christmas this year.
Hosting Christmas means planning Christmas...not exactly my forte.  
We ended up having a blast though.

For this post, I'm focusing on our first activity, the blessing bags.  

First, we created blessing bags, an idea I found on pinterest.  
We put together gallon size ziploc bags and filled them with things that might be useful to the homeless.  
Each family brought 3-4 things to contribute.  
The kids packed up the bags and made cards to go in them.  

They really enjoyed the process.

Then we set out to deliver them. 
While driving along the way we saw a couple of people holding their signs at the stoplights, so we gave them bags.  

We headed toward downtown, and this is where my "big ideas" don't always mingle well with the small details.    

We found someone pushing a shopping cart, so with a two car caravan we pull over and parked.
She was on the move so by the time we got 10 people piled out of the cars, gathered up the bags, then decided to hand out water too, she was a couple of blocks ahead of us.
We set out after her.
It felt really awkward chasing down a homeless woman on the move.
I can only imagine what she may have been thinking with 10 people trying to play it cool, but hurriedly chasing after her!!

We finally caught up with her and I realized this probably wasn't the best way to distribute the bags!
I asked her if we were to pass out more bags to more people where we might find them.
She was EXTREMELY helpful.
We got the inside scoop on where they all hang out.

In fact, this is where the experience became a shocking reality.
We saw one man's dwelling place.
Literally just a pile of blankets, with his bible and a couple of books in the doorway of an abandoned retail space.
The next doorway over was his bathroom.
It really smelled...bad.

We walked a few blocks and had no trouble finding people to give them to.
We brought 10 bags and could have handed out dozens.  

On our way back to the cars, we ran into a man who called himself "Cadillac."
He asked us if we would love him because no one else loves him.
He told us stories of himself  back in the '60's "saying what he means and doing what he says"
Turns out, he's a huge OU fan. 
The sad thing is, he probably won't remember us or our conversation. 
The alcohol on his breath was overly obvious. 

I think the experience was just as beneficial (if not more) to us than to the recipients of our blessing bags.
It deepened my appreciation of humanity.
I also felt my heart wanting to get to know these people more, but then I'm not sure I could handle if/when something terrible happened to them.
It was a good family experience...definitely something we will do again.   

Wednesday, December 4, 2013

Valet Service for Brain Waves

Music therapy.
It's amazing.  
I'm still in complete awe that we've come so far with brain development and technology.  
How can listening to music possibly help with potty training?!
I don't know but it does!!
Our Occupational Therapist explained that it's a technique called gating.  
They take the high-highs and the low-lows of a 20,000 hertz sound wave and use those to send signals to the brain. 
Right now, Maddie's brain is like a traffic jam and signals are not getting through.  
These high intensity sound waves are breaking up the traffic jam and re-routing traffic to their designated parking spots. 
It's our valet service for brain waves!  
Maddie initiated going to the potty and went all by herself this morning.  
This has never happened.  
She's pottied in the potty before, but she has never realized she's needed to go, gone to the potty, and used it before today. 
Not every day is a success story though.
I think any time you encounter "therapy" there will be push and pull.
Her body has already adapted to the status quo and has been coping for 5 years.  
Now, we are messing with the status quo and sometimes we have to give in to the resistance of changing that status quo.
Our goal is 30 minutes of music therapy daily.
Some days we do 40 minutes, some days we are lucky to get 10 minutes.  
On the rough days, Maddie will rip her head phones off.
It's imperative that she doesn't dictate when the therapy session is over.  
I have to force them back on her, hold her arms down and struggle through the next couple of minutes so I can be the one to declare the music session is over. 
Forcing your child to endure something you know is uncomfortable (and at your hands) is the worst feeling in the world.
I hate every second of the bad days, and so does Maddie.
But the good days are really good.
It's a nice, uninterrupted play time for at least 30 minutes.  
It's a chance to turn off all electronic devices and get back to the basics of just playing.   
Phones are put away, T.V. is turned off, Ipad is out of sight and we get to reconnect.
So much to be grateful for!!

Thursday, November 14, 2013

Adventures with Pauley the Praying Mantis

One day Pauley requested a  photoshoot.
He had heard I was the best photographer this side of the creek, and he wanted the best.  
Normally I don't shoot insects, but on this particular day I indulged his request.
After all, he had survived a nasty little run-in with a giant and lost an antennae.  
 He deserved to be captured (by the camera, not the giant).
He was really rocking the photos...
When suddenly...
Pauley heard the thudding of footsteps off in the distance.
Alarmed and utterly afraid, Pauley somehow invoked his courage to appear.
Just as Pauley feared, the bouncing, smiling giant appeared, oblivious and unconcerned with Pauley.
He sighed a huge sigh of relief, letting his guard down when
the giant curiously noticed Pauley.
After a rather heavy-handed poke, Pauley tried to play it cool and
pretend dead.
This really tickled the giant and she decided to engage in this play with him.
They unfortunately came from two very different worlds with two very different views of "play."
Pauley bolted.
Later we found Pauley's close but distant cousin, Pablo, looking on in horror.
They were close friends, but very distant mantis miles apart. 
He safely resided up in the tree away from the giant's curiosity. 
Perhaps now, Pauley will heed his cousin's urging and find refuge in the safe, but distant trees far away from the photographers and the giants. 

Thursday, October 24, 2013

Navigating Through Sensory Processing Disorder

Tuesday Maddie was diagnosed with Hypo-sensitive Sensory Processing Disorder (SPD)

It's always overwhelming to receive a definitive diagnosis even when you suspect there's a problem.  
Now I'm in research mode to find out and understand exactly what Maddie's daily life is really like, and how we can help her.

We are starting therapy next week with an Occupational Therapist.
We will be using Integrated Listening Systems (or music therapy) as our main source of treatment.  

I had NO IDEA  the signs/symptoms of this disorder, but now that we have the information we do, it's like the puzzle pieces are all fitting together. 

Our first puzzle piece came when she was just an infant.  
If I was holding her, and I would laugh really loud, Maddie would instantly cry (and this was a baby that hardly ever cried)
 She still hates loud noises. 

Then I started noticing some "quirks"

She repeated tasks over and over and over.  
She would stack these cups for as long as 30 minutes at a time...all the time.  

And then I would notice things and would think, "hmmm, not sure that's normal."

On this particular day she had four things: the fireman's hat, the necklace, the purse, and a bracelet.
Instead of pretending to be a fireman like most kids, she would just put on the necklace, put on the hat, put on the purse, and put on the bracelet. 
Then, she would take off the bracelet, take off the purse, take off the hat, and take off the necklace.
She repeated that over and over for probably 15 times in a row.  

Then I began noticing how she loves to line things up.

Another strange symptom is she has to smell everything. 
She also loves to lick strange things.

But the main symptom that had us investigating the problem is her spinning.  
She always spins and spins and spins and spins and never ever gets dizzy.  

I say she's "literally unwinding" but it was her speech therapist that noticed it one day after a session.  
She knew it was a red flag and suggested we check into it.

I'm so glad we did!!
Although it seems like these little quirks are just part of her personality, 
the vestibular system in our brains is the only system fully developed at the time of birth.
It's the foundation for all other developing systems and it literally affects everything. 
Handwriting, gross motor bilateral movements, fine motor, speech, etc.

Our issues with potty training can be associated with this as well. 
The good news is, it can all be helped with therapy and once Maddie is regulated, we'll be able to work on these areas she's falling behind.

She's so amazing, and I'm in awe of her even more now that I realize she's been coping with this and self-regulating for 5 years now.
I'm excited that we now have a plan to hopefully make life a little easier for her, and I'm trying not to dwell on the fact it's taken this long to get started!

It turns out that Sensory Processing Disorder is really fairly common (estimated 1 in 20 children)

*I think it's important if you see some of these items on the list (Maddie has several indicators) and wonder about a child in your life and know that these things are interrupting quality of life, it's worth checking into.*

On the other hand, sometimes it's these funny, quirky things that make kids... kids and we celebrate their individuality and uniqueness. 

It's always a balance, but if you are like me and you see things that make you tilt your head and wonder, it's worth investigating!!

As we navigate these new waters, hopefully there will be more knowledge and understanding to share and pass on. 


Thursday, October 17, 2013


Life keeps happening.

Its' been a very trying year so far.  
Our first miscarriage in December.
Losing our beloved Gracie in February.
The tornado in May.
Furloughs in September.
And now our second miscarriage.  

The ironic this is, for the first time in my life I have baby fever.  
And if we were pawns in the game of life it would seem cruel that it's been taken from us.  
But the thing is, my trust in God checkmates my own desires in this life.  
He's proven himself trustworthy over and over again, and I believe that He is good.
Or, as Paul put it, 
"I am crucified with Christ, it is no longer I who live, but Christ who lives in me.  And the life I now live in the flesh I live by faith in the Son of God who loved me and gave himself for me."
 Galatians 2:20
I finally get that verse.
   It's about surrender.  
Surrendering our rights.  
Surrendering our desires, our wishes, our dreams, our plans.
Although it seems to the world as bondage, it was this verse that gave me freedom the weekend we found out we lost the baby.  
Freedom from the bondage of being responsible for the loss and freedom from the unhealthy kind of grief that can weigh us down and keep us stuck.  
Through His Spirit in me, I've learned to let it go...and trust.

It's also been yet another reminder of what an absolute miracle Maddie is!!  
She brings us so much joy, how could I ever waste time with discontentment!



Sunday, September 29, 2013

My Tambourine Moment

"I will sing to the Lord, for he has triumphed gloriously; He...."

I attended the Beth Moore's Living Proof conference this weekend.  
At the end of our time there we were asked to complete the sentence above.  

Beth Moore is so gifted in the Word.  
We studied Exodus 15.
The Israelites have just crossed the Red Sea and have been delivered from the Egyptians.  
Chapter 15 is the song of Moses, rejoicing in what had just happened.  
We focused specifically on Miriam, Moses' sister who grabbed her tambourine and led the ladies in rejoicing.

In completing the first statement, we were defining our own tambourine moment.  
It's that moment in life that you cannot HELP but praise God, knowing the favor He has given.  
That moment when nothing else can explain what just happened.  
That moment when it's perfectly clear God has you in His hands, and He would do anything to 
fight. for. you.

Without getting too wordy, I'll just say really quickly the point that really hit home with me was "nobody appreciates deliverance like those who've nearly been destroyed." 

In order to understand my tambourine moment, I'll give a bit of background first. 

In high school and into my first years of college, I had extreme body image issues.  
I wanted SO BAD to be that coveted size 2.  
I was an athletic girl and was never big, but in my mind, I was HUGE.  
I envied so many of my friends with cute little figures and considered about what it might take to reach my dream.
The good thing was, I was too chicken to actually do the anorexic thing, but I counted calories and obsessed over diet and would say I may have been one devastation away from finding the courage. 

At 16, I was diagnosed with endometriosis and had my first surgery.
Recovering extremely quickly, it felt like no big deal.
At 20, all of the endometriosis had returned and we needed to repeat the same surgery. 
This time things didn't go so well. 
My surgery was on a Tuesday morning. 
By Friday, I was throwing up buckets of blood with a temperature of 104.
I have to insert a side note here for my Mom's sake-she called the doctors and did everything she could to convince them this was serious.
She was told I must have had an allergic reaction and should take some benadryl.
By early Sunday morning, I was in so much pain, I was on the bathroom floor and  thought to God, "this really hurts, is this what it feels like to die."
And maybe it was the 104 delirious-fever but I swear it was like an audible voice that just simply said, "yes."

Kyle and I were engaged to be married.
It was March and we were in the midst of planning our June wedding.  
I wasn't ready to die. 
I cried out for mercy, and felt myself slipping away.
I thought, I need to get upstairs and wake Mom up.
Before I could finish my thought, Mom was there.
She said, "we are taking you to the ER."
It was 2:00 in the morning. 
We've talked about it later, and we both know it was the exact same moment I cried out for mercy.  
God orchestrated it all.
At the ER, we discovered I was so dehydrated they estimated another 30 minutes, and I would have gone into cardiac arrest.  
I had depleted all of my potassium levels.  
It took 5 hours to re-hydrate me.
We would later find out I had staph infection...an abscess the size of a grapefruit.
Before the first surgery, I went in weighing 112.  
Two weeks later, I left the hospital weighing 94 pounds.  
It took 8 weeks to recover and when I went to buy some clothes, size 0 was too big.  

I looked in the mirror and suddenly realized how RIDICULOUS my dream to be a size 2 really was.  
It was all so foolish, and God saved me not only from physical death, but from the emotional bondage of body image.  
I haven't cared a lick what size I am since then, as long as I am healthy.  

"I will sing to the Lord, for He has triumphed gloriously; He saved me and called me beautiful in His sight."
My tambourine moment!! 

Thursday, September 19, 2013

Just a Bit of Catching Up...

Finding time to blog these past few days has been completely non-existent!
I've got a lot of catching up to do :)  

Let's go waaaayyy back to Labor Day weekend.  
We had so much fun.

First, on Saturday we took Maddie to Andy Alligator's water park.

She's such a water baby.  
LOVE, LOVE, LOVES the water.  

She also really loves stacking...

The Sunday of Labor Day weekend we had a BLAST at the Wiggle Out Loud event.

Music, Music, Music!!!!  
All for kids...how cool is that?!

 Dancing, dancing, dancing!!

and we take a bow!

There was also other fun active activities like parachute play...

Phew, time to stop for a water break...

And then we end with another "water break"

 Good times!

And, a reporter from Fox News interviewed me while we were there.  
The interview aired on the 9 o'clock news!!

music, music, music+dancing, dancing, dancing= fun, fun, fun!!